Miss Jess

Jessica's health has been a bit of a rollercoaster lately. As soon as I decide to send an update, her symptoms change and of course needs my attention - practically constantly - and before I know it, it's 2am and I've just shut down the computer and am headed to bed... and then I realize that I didn't update. Again.

Jessica came down with a cough and congestion. It was getting to where I was worried that she might cause herself to have another lung bleed. I sent out an email to family, friends and our wonderful CHD support groups and so many of you responded with good advice and support.

Jessica is doing better as far as her cough and congestion goes. She ended up with a fever and body aches. In fact, Friday night her fever got up to 102.4 but it was much lower on Saturday and it broke by Sunday. The breathing treatments helped her considerably so I didn't try the Mucinex D. The doctor's office did call me back on Friday and told me it was ok to use and I received many emails from families with CHD children who have gotten the OK from their doctors too. THANKS SO MUCH! I knew I could count on all you experts! The Delsym is a go too. I've either used it or Robitussin when needed.

After Jessica's fever broke and her body aches were better she started with a bit of nausea and diarrhea on Monday. She never threw up and was able to keep down jello, soda, Popsicles so I wasn't too worried about dehydration... and by the end of Monday the diarrhea was gone and she was able to eat real food. Tuesday she was able to eat and hasn't had any sign of diarrhea but she is still having a lot of tummy aches. Sometimes she holds her tummy and really complains that it hurts. She is still taking the Carafate and Prevacid so I just don't know what to think. I'll be giving her GI doc a call today. I just know they are going to say "there's nothing else we can do". At first I thought it was a viral thing but I'm not so sure anymore. The GI doctor did say that her Gastritis and Ulcerations could be caused by Hypoxia (lack of oxygen). It's been over 2 months since the Endoscopy and we've been very faithful about giving her the Carafate every single day even if it is a pain. Speaking of Carafate, Jess is receiving the generic and the first bottle was light blue tablets. They are huge horse pills - larger than most vitamins - and Jessica took them with no problem. The 2nd bottle they gave us was from a different manufacturer and they are the same size and white - but very chalky. Quite a few times when Jess has tried to swallow the pill it starts to dissolve right in her mouth! She gags and chokes... I've had her spit it out and she can't get the icky taste out of her mouth! I've tried dissolving the pill in a medicine cup and she will drink it, but the chalky stuff settles to the bottom and she doesn't get all of it when we do it that way and she still has chalky junk in her mouth. So I called our pharmacy and they are requesting the pills from the first manufacturer. Now all I have to do is remind them every single month when I order it because you know I can't count on them to do it right. It's just not right that she has so many problems at every turn.

Jess continues to be quite "blue" but she has been so happy since starting to feel better Monday night. She was very discouraged over the weekend that she was still so sick but the last couple of days she has been laughing and giggling at every little silly thing. We sure appreciate it when she feels well enough to smile and laugh. Most people, myself included, would not be smiling if we felt as bad as she does ALL THE TIME. She is just amazing.

Going to bed at night and staying in bed is still a very difficult thing to accomplish. Every. Single. Night. But we keep at it.